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Leaving Behind the Victim of Dementia

Unfortunately, I come across many anecdotal stories of caregivers dying. And as a result, leaving behind the person who depended upon them. Increasingly, those left behind are suffering from dementia.

This observation raises two questions. The obvious one, which is an emotional question; who will look after the care recipient now? But a second question has a more radical focus; why are these caregivers dying earlier?

What has been described as a ‘living bereavement’, caring for a loved one with dementia becomes increasingly difficult the further the disease progresses. Unlike most other caregiving, where the care, in most cases, becomes less stressful because the person improves (e.g. some stroke patients) or they grow up (e.g. children) or they die quickly (e.g. some cancer patients) , with dementia the diseases progressively incapacitates the victim. With further incapacity comes a greater burden on the caregiver. Caregivers of loved ones with dementia carry an extra burden that is reflected in more severe and negative effects.

Although David Roth and his colleagues, in their study of 3,503 family caregivers, reported that caregiving was not associated with increased risk of death, they failed to identify the specific type—and intensity—of care being provided. Not all caregiving is the same. And you learn that when you look after a victim of dementia.

As early as 1990, Janice Kiecolt-Glaser from Ohio State University and her colleagues measured the different impact caring for a patient with dementia had on their caregivers. They reported that caregivers of people with dementia had significantly more depression, reported less support and fewer important personal relationships, and experienced more days of illnesses from infections, when compared with caregivers of non-demented loved ones. What was convincing in their argument is that these caregivers had physical immunological deficiencies. They were sicker.

Richard Schulz and his colleagues from the University of Pittsburgh in 1999 showed how even after adjusting for a variety of factors, caregivers who are experiencing strain had mortality risks that were 63 percent higher than non-caregiving controls. The beneficial spiritual and physical effects of caregiving do not override the negative effects of caring for someone with dementia.

One indicator of sickness, which also reduces your lifespan—is the size of your telomeres. These DNA blocks at the end of each of our 46 chromosomes have been likened to an aglet—the plastic at the end of shoelaces. The size of these telomeres determine how many times each cell can replicate—the longer the telomeres, the more your cell can replicate, the longer they live, the longer you live. There are numerous studies being published showing how stress and trauma reduces telomeres. With varying intensities of care there are reduction in these telomeres. Dementia caregivers not only have vastly shortened telomeres, but this change is permanent even after their loved one dies. Despite most caregivers of dementing illness being older and frailer than other caregivers, most choose to look after their loved ones. The decision, of whether providing this care accelerates your mortality faster than the mortality of your care recipient, is not an easy one to make.